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Recurring Pneumonia after MAC
My husband was diagnosed with MAC in early 2024. He completed the year long treatment of 3 antibiotics. The day the told him it was clear from MAC he found out he had 2 different bacteria in his lungs including E.coli. Since being treated for MAC and the bacterial infection he has had pneumonia 3-4 times. It seems like every time he gets off of antibiotics a few weeks he ends up sick again. We just don’t feel like we’re getting much help from his pulmonologist or infectious disease doctor. He has been sick for about 5 years before being diagnosed (every time he got off antibiotics for a few months) he got bronchitis or pneumonia again. They found it after he was hospitalized with pneumonia and a Bronchoscopy was done. Can anyone give us advice on how to get someone who will help? Thank you.
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You've found a good place here to ask questions and get support. Welcome.
Sorry to read of your husband's troubles. Recently established is a care network with link below on where to find help from experts in bronchiectasis and NTM. Perhaps you will say where you're located and others might chime in with their experience in your geography. If nothing is close by some decide to travel to the experts, which can be very worthwhile. They are spread across the USA so hopefully you'll find one not too far from home.
https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information
You might also like to read through the thread entitled, Resources for the ABCs on Bronchiectasis and NTM.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/?pg=1#chv4-comment-stream-header
A question for you: Is your husband practicing airway clearance everyday? Airway clearance can go along way in helping to avoid reinfection.
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2 ReactionsThank you for the information! I will definitely read it. We are located in Birmingham, Alabama.I saw a mention of airway clearance on this site, but we have never heard of it. How do you find out about it? We just don’t feel like we’re getting anywhere.
If I may ask, where is your husband being treated in Birmingham? In case you didn't know there is an NTM Clinic that specializes in treating these diseases there at UAB.
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1 ReactionThank you so much. I already have a call in to them. He’s being seen at Pulmonary Associates of the Southeast and at Birmingham Infectious Disease and Infusion. We just don’t feel we’re getting any answers. The weird thing is that he was in UAB on a ventilator for 7 days, but we didn’t get the results of his bronchoscopy until after he was discharged. We were still trying to figure out what was wrong with him by seeing an infectious disease dr. who finally diagnosed him based on the results. Thank you so much! It seems like all he does is go to doctors who do not give him any information.
Hi @jeff0198 -- I wanted to chime in with others here & encourage you to help your husband get into the Bronchiectasis center at US . It is still common to be treated at a large medical center by general pulmonologists and infectious disease docs who don't know about or refer to the bronchiectasis and Mac specialists at their institution. I had this same experience (but thankfully have not been hospitalized). Ironically, it was my Crohn's disease specialist at NYU medical center who referred me to the BE/MAC center there after a year+ of chronic cough. He & my now-BE doctor share a number of patients as there is a little-understood association between BE & Crohn's plus some autoimmune conditions. The BE center found MAC. My BE had been followed for years before that by an NYU general pulmonologist who was very nice but not aggressive.
Thank you so much. Its really encouraging to find others that understand and share their wealth of knowledge with us.
One last question. Has anyone heard of skin rashes or mouth sores related to NTM?
Ask as many questions as you'd like! This is the place for that.
Maybe from the drug treatment? I cannot say for sure as I have not taken the big 3 cocktail. NTM alone in the lungs whether it's MAC or MAI or another variant seem to have symptoms which include productive cough, fatigue, night sweats, etc. I have not heard of it causing a rash. It's possible to have NTM in skin tissues but from what I've read here that is rare.
You might like to review this document which answers some questions about NTM but not sure about the rash question, it might be unrelated.
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf